First, we put our For Sale By Owner in our yard this morning. Already had a call about it, but it was a Realtor and she said her clients wanted something a little cheaper. So, hopefully something will pan out SOON! After all, the medical bills are mounting!
We scheduled Blair's 1st surgery this week. It will be August 20th. This surgery will be to put the tissue expanders in. Then, 6 weeks later she will go back for a closure surgery. She will probably have to have more than 1 closure surgery because of everything that is out. I'm almost positive they won't be able to pull the muscle together in the 1st closure surgery.
We are still waiting for AR Children's to send all of Baylee's info to Boston. DO NOT get me started on this. They were suppose to do this 3 weeks ago. I called the lady in the Cardiology clinic at the beginning of LAST week and she said she would take care of it. I got a call from Julie (Dr. Mullen's (Hypertension Specialist) Nurse Practitioner) yesterday to tell me she hadn't received anything yet. So, I called that same lady back yesterday at AR Children's and let her have it. She said, "Oh, have they not received anything yet... because I passed all of that on to Dr. Eble and he was suppose to take care of it." I'm like DUH... I wouldn't be calling if you would of sent everything to them. SO FRUSTRATING! That's the only thing we are waiting on to get our appt scheduled in Boston.
I've been cleaning like crazy all morning. I finally got Baylee's room painted and now we are trying to find her some furniture (cheap) on Craigslist or something to buy to put in there. We can't really afford to spend $1,000 on a bed right now so I'm looking for something used in good condition. I think I've talked her in to a twin bed with a trundle underneath it. Now, if we could just find that we will be doing good! :)
You should see my garage sale pile in my garage. OMG... it's HUGE and taking up the 3rd car part! I'm thinking we will have a sale in the next couple weeks. I'm still cleaning out closets and adding to the pile. Plus, I still need to get everything priced and get my Sister's long tables over here to put everything on. Hopefully I will make enough money to cover Baylee's bedroom furniture. That's my goal anyway!
Hugs - Tiff
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Omphalocele and PPH/RVH
This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
3 comments:
Sorry to hear it's been so hectic. It sounds like you are making forward progress (even if it is a bit slow, waiting on the docs to send paperwork along! Grrr).
You are always so crazy busy!! Glad to hear the room is coming together and I'll cross my fingers for some cheap furniture to pop up.
Glad you got Blair scheduled--now if they could just work on getting Baylee squared away, I know that would be a little bit of weight off your shoulders! I hope you have some luck with your house being FSBO. The garage sale might bring in more money than you think--and even if it doesn't, at least it's still cash in your hand instead of junk in your attic. I can't wait to see what you do with Baylee's room--the used bed is a fantastic idea--Cheyenne had an old little wooden bed that I painted red and it looked so charming in her little room at that age! I keep you guys all in my thoughts and prayers.
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